Archive for the ‘Community’ Category
Posted on June 14, 2018
Many “invisible” illnesses like POTS and Ehlers-Danlos Syndromes (EDS) are not understood by the medical community and the general public. Learn more and spread awareness in your community. Standing up for POTS EDS Awareness Education
Posted on May 28, 2018
RI EDS Awareness and Support Group display Krista Brack krista@rieds.org www.rieds.org We made candy brains for the neurosurgeons, it was a huge hit.
Posted on April 11, 2018
For the past few years, CSF has stormed Capitol Hill with you to make a difference for people living with Chiari malformation, syringomyelia, Ehlers-Danlos syndrome and many other related disorders… and it seems like Congress is really listening. I n February 2015, Congress voted to increase the NIH budget by $31.3 billion to support more biomedical research. In 2016, […]
Posted on April 10, 2018
We were excited to attend Mandy Harvey’s performance in Warren, Ohio She was interviewed and described her struggles with Ehlers-Danlos Syndromes. Click here for a link to the recording of her performance. She was introduced around the 18 minute time mark. Click here for more about Mandy Harvey
Posted on April 3, 2018
Tri-state EDS support group members were interviewed to discuss EDS Awareness Month Ashton Nesmith-Kochera is with Victoria Graham and 8 others By: Jonathan Hunter Updated: May 17, 2018 11:18 PM EDT Click here for the link to the video of this interview MARTINSBURG, W.Va. – The month of May is Ehlers-Danlos Syndrome Awareness month. EDS is an inherited condition that affects […]
Posted on April 1, 2018
By Chris Baraniuk Some people are resistant to local anaesthetic, meaning they must endure dental and medical procedures without such pain relief. And we’re only beginning to understand why. To Lori Lemon, the doctors all seemed flabbergasted. She had come in to the Mayo Clinic in Jacksonville, Florida, to have a lipoma – a growth […]
Posted on March 30, 2018
Click here to check out our new New Instagram site EDS Awareness1
Posted on March 20, 2018
Tiffany wakes up exhausted with her Ehlers-Danlos Syndrome issues. Life with Ehlers Danlos: Surviving Exhaustion While Still “Adulting” By Tiffany Early I’m tired. That’s not exactly a news flash. I’m forever and always tired. One thing that I have in common with the majority of the chronic illness and rare disease community is my chronic […]
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